Caregiver's burden in disorders of consciousness: a longitudinal study

Covelli, Venusia; Sattin, Davide; Giovannetti, Ambra Mara; Scaratti, Chiara; Willems, Michelle; Leonardi, Matilde

doi:10.1111/ane.12550

Cited by 39 publications

(22 citation statements)

References 29 publications

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“…At one of the studies, it has been notified that the psychological burden of the caretakers of PVS patients was gradually decreasing after 2,5 years due to finding out that there are physical and psychological burdens and learning the strategies of how to cope with these burdens and stress while the economic burden was still affecting them negatively (11). In another study, the caretakers were going through high levels of long-term grief disorder and the coping strategies were being helpful (18).…”

Section: Discussionmentioning

confidence: 99%

“…Among all of them, dealing with emotional problems, difficulties of giving care at home, and economic and social problems are the main issues (7,10). The need for long-term homecare for such patients are mostly fulfilled either by professionals in healthcare or social care (formal) or by family members, friends, people with no professional background (Informal) (11).…”

Section: Introductionmentioning

confidence: 99%

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Living with the patient who has persistence vegetative state: a qualitative study

Dinçer¹,

Torun²

2017

J Turgut Ozal Med Cent

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Aim: The purpose of this research is to discover the experiences of the families with Persistence Vegetative State (PVS) patients have during homecare after being discharged from Palliative Care Center. In this study, it has been tried to bring out the difficulties occurring during homecare and the reasons for these difficulties. Material and Methods:The study is envisioned to be qualitative in regards with phenomenological approach, face to face and semistructured interviews. The study carried out with the 17 family members of patients with PVS voluntarily at their houses. Interviews were analyzed according to qualitative content analysis. Results: The age average of the family members in this study were 48.2±14.3 year, 12(70.6%) of them were woman. 7(41,2%) of the care providers were the spouse of the patient. The families gave homecare at a median value of 466(IQR =326) days. The study results brought out 4 main themes. The main themes were; Severe Burden, Concern/Fear, Limitations/Incompetencies, Hope/ Acceptance/Rejection. Conclusions:The study results indicate that it is very tough for families to have patients with PVS and they have to go through some strains as a result of the circumstances. With this study, it's set forth that in order to reintegrate these families into the society, support the ones with financial, physical and psychosocial problems, there has to be a social, health related and economic interference and policies have to be developed.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Living with the patient who has persistence vegetative state: a qualitative study

Dinçer¹,

Torun²

2017

J Turgut Ozal Med Cent

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“…The experience of physical, financial and psychosocial dimensions of burden associated with caregiving for a family member with a disorder of consciousness , was investigated in nine of 18 studies, employing 4 different measures. Less than half of a sample of 48 participants were in paid employment with 30.6% of 48 participants experiencing financial problems over a two year period (33) and 38% in another study reported financial difficulties (31).…”

Section: Insert Table 2 Herementioning

confidence: 97%

The psychological impact of prolonged disorders of consciousness on caregivers: a systematic review of quantitative studies

et al. 2017

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Review methods: Studies were included that used quantitative methodologies and psychological measures to investigate experiences. The PRISMA statement was followed with inclusion criteria set a priori. A data synthesis summarised psychological constructs studied.Results: A total of 18 studies (ranging between n=16 -487 participants) met the inclusion criteria with 15 of 18 studies focused on the primary caregiver. A total of 23 standardized psychological measures were identified to assess four primary psychological constructs: Loss and grief, psychological wellbeing changes, burden and use of coping strategies.Conclusions: Small sample sizes, limited variables and reliance on observational methods affected quality. Caregivers do find ways to manage independently, but some exhibit clinically significant psychological distress that does not change over time alone and may get worse.3

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“…Acquired brain injuries can result in severe disorders of consciousness, such as minimally conscious state (MCS), with often serious lifelong consequences for patients and their families [1–3]. Early onset of rehabilitation is a crucial factor with the goal of enhancing the patient’s consciousness by creating learning possibilities [4,5].…”

Section: Introductionmentioning

confidence: 99%

Animal-assisted therapy for patients in a minimally conscious state: A randomized two treatment multi-period crossover trial

et al. 2019

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ObjectiveTo investigate if animal-assisted therapy (AAT) leads to higher consciousness in patients in a minimally conscious state during a therapy session, measured via behavioral reactions, heart rate and heart rate variability.MethodsIn a randomized two treatment multi-period crossover trial, 10 patients in a minimally conscious state participated in eight AAT sessions and eight paralleled conventional therapy sessions, leading to 78 AAT and 73 analyzed control sessions. Patients’ responses during sessions were assessed via behavioral video coding and the Basler Vegetative State Assessment (BAVESTA), heart rate and heart rate variability (SDNN, RMSSD, HF and LF). Data were analyzed with generalized linear mixed models.ResultsPatients showed more eye movements (IRR = 1.31, 95% CI: 1.23 to 1.40, p < 0.001) and active movements per tactile input during AAT compared to control sessions (IRR = 1.13, 95% CI: 1.02 to 1.25, p = 0.018). No difference was found for positive emotions. With BAVESTA, patients’ overall behavioral reactions were rated higher during AAT (b = 0.11, 95% CI: 0.01 to 0.22, p = 0.038). AAT led to significantly higher LF (b = 5.82, 95% CI: 0.55 to 11.08, p = 0.031) and lower HF (b = -5.80, 95% CI: -11.06 to -0.57, p = 0.030), while heart rate, SDNN, RMSSD did not differ.ConclusionsPatients in a minimally conscious state showed more behavioral reactions and increased physiological arousal during AAT compared to control sessions. This might indicate increased consciousness during therapeutic sessions in the presence of an animal.Trial registrationClinicalTrials.gov NCT02629302.

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Caregiver's burden in disorders of consciousness: a longitudinal study

Abstract: Although high level of burden was observed, it tends to decrease over time, except for financial burden. Hence, this study suggests the importance to plan strategies or targeted interventions in order to reduce the psychosocial and financial burden associated with caregiving.

Cited by 39 publications

References 29 publications

Living with the patient who has persistence vegetative state: a qualitative study

Living with the patient who has persistence vegetative state: a qualitative study

The psychological impact of prolonged disorders of consciousness on caregivers: a systematic review of quantitative studies

Animal-assisted therapy for patients in a minimally conscious state: A randomized two treatment multi-period crossover trial

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